Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research.

Dr Irene Tuffrey-Wijne, Associate Professor in Intellectual Disability and Palliative Care at Kingston University and St George’s University of London, UK, and Honorary Senior Research Fellow, Maastricht University, Netherlands, talks to us about her research career and her thoughts on winning the award that she received in Madrid today.

You have extensive clinical experience in both intellectual disability and palliative care. What motivated your interest in this area?

Irene Tuffrey-Wijne: Before my job as a hospice palliative care nurse (which I did for eight years), I spent eight years in a L’Arche community, where people with and without intellectual disabilities live and work together. That experience of real sharing has shaped my life, my work and the way in which I approach research. During my hospice years in the 1990s, it struck me that there were very, very few patients who had intellectual disabilities. It made me wonder what happened to them when they were terminally ill. I searched the literature but could find absolutely nothing on the end-of-life care needs of people with intellectual disabilities. So when my local university got some funding for a project to improve palliative care for people with intellectual disabilities and needed a nurse to run it I jumped at it. I soon realised that it was hard to improve practice without knowledge. That’s why I decided to focus on doing research in this field.

Tell us about the programme of research on intellectual disability, cancer and palliative care that led to your PhD, and some of the main findings?

IT-W: My first major study (2005-2008) was called ‘The Veronica Project’ (named after a woman with Down syndrome who died of cancer) and looked at the experiences of 13 people with intellectual disabilities who had cancer. To understand their point of view I became like an anthropologist, using ethnographic methods and spending a lot of time with each participant. It was profoundly moving and illuminating. Most participants died during the study. We later employed Amanda Cresswell, one of the only two survivors in that study, as a co-researcher – and she is here today in Madrid to help me with my plenary presentation. During the Veronica Project, I did my PhD by publication at Maastricht University in the Netherlands (completed in 2007). It consisted of a literature review; one of the case studies from The Veronica Project; and a couple of shorter research studies which I did ‘on the side’, including one where I had adapted the Nominal Group Technique for use with people with intellectual disabilities, so I could get their views on end-of-life care provision.

The key finding was the huge importance of listening to people with intellectual disabilities. We need to try and understand their lives and perspectives, if we want to provide them with adequate support at the end of life. This may require some creativity and an adaptation of our usual methods of communication – but most of all, it requires openness and a willingness to listen.

My later research focused on another key finding, which was the difficulty everyone had in knowing whether, and how, to tell people that they are ill and are going to die. This led to the development of a new model for breaking bad news (see the website Breaking Bad News). My current research is also around communication; it’s called the ‘Talking About Dying study’.

Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is said to be a key part of your work. Do you have any tips for other researchers on how you have managed to achieve this level of user involvement?

IT-W: Perhaps it would have been better to ask my co-researchers that question – I am still learning! First of all, make sure that you can explain everything you do in an easy way. When I defended my PhD, one of the professors remarked that he had never before seen a PhD that included an easy-read, accessible summary with pictures!

I have learnt that meaningful involvement requires a lot of time and resources. It is important that people’s involvement is not tokenistic, and that everyone understands what their role is. It took me years to understand that everyone has a different role. For example, when it comes to co-facilitating focus groups, Amanda’s contribution was mostly that of a ‘role model’, helping to break down barriers and showing participants that it is OK to share experiences, to have an opinion, or not to know the answer.

For our Research Advisory Group meetings, we need to write the agenda and the minutes in easy-read format. It’s excellent for ensuring that your aims, objectives and methods are clear. I have found that if I cannot explain things in a simple way, it’s usually because there is actually something wrong with it! For meetings involving different stakeholder groups, I usually meet with the co-researchers and advisors with intellectual disabilities beforehand, so they are more prepared for the meeting. Let me admit, though, that the user involvement is not yet as good as I would like it to be. To do it properly, we would need to invest not only in paying co-researchers but also paying for extra research assistance to support their work. I don’t think funders quite realise how much investment is needed for this, and how much time it takes. I’m also constantly learning new ways to adapt research methods.

On top of your academic work, you are a trustee of the Palliative Care of People with Learning Disabilities (PCPLD) Network and you were Chair of the EAPC Taskforce on Palliative Care for People with Intellectual Disabilities until its completion. What have been the biggest achievements of these important groups?

IT-W: I think that through our work with the PCPLD Network and the EAPC Taskforce, we have raised awareness. The PCPLD Network is coming up to its 20th anniversary. From the early years, dedicated members kept chipping away, doggedly turning up at EAPC congresses with posters and, increasingly, oral papers. When I became chair of the PCPLD Network in 2008, we launched a website that continues to provide a platform for practitioners and families to share resources and information. We have just gained charitable status, and are now looking at ways to build on our achievements.

I think it is tremendously exciting that the palliative care needs of people with intellectual disabilities are now really getting attention.

What does winning the EAPC Post-Doctoral Awardmean to you?

IT-W: I am absolutely thrilled to have won this award. I see it as recognition, not so much of myself and my research, but of the importance of the needs of people with intellectual disabilities. They are such a marginalised group, and they really do need special attention in order to have their needs met. For years, I have argued that if you can give good palliative care to people who are not able to tell you what they want, and who may express their symptoms and distress in unexpected and unconventional ways, then you can meet the needs of any of your patients. I am really pleased to address the congress today in a plenary session and share my learning.

Outside of palliative care, what do you like to do to relax and unwind?

IT-W: Singing … Learning to play the cello … I have also just discovered the thrill of ‘cold-water-swimming’ in an outdoor pool. The coldest it got this winter was 2°C. One thing is sure: if I manage to get to a pool in Madrid, it will feel positively tropical!

COME ALONG TO THE OPEN MEETING OF THE EAPC REFERENCE GROUP ON INTELLECTUAL DISABILITIES ON SATURDAY 20 MAY , ROOM N111 AT 08h00 – all welcome if you’re attending the EAPC WORLD CONGRESS IN MADRID …